The Truth of the Matter

 She will never drive.
She will never have glasses that will correct her loss of sight.
She will never be able to see the world like you and I do.
She will never not need support or modification to help her get through her day.

She will always touch your face to orient herself.
She will always come in for a hug for security.
She will always be loved
She will always be beautiful
She will always love with her whole self
She will steal your heart.


I was watching "Going Blind" tonight (if you are interested in this documentary, you can download it on Amazon fro $1.99).  It is a good film - filed with a lot of interesting information about how older folks are losing their vision.  But I just found myself wanting to shout at the film: "You lived your life!  You have had 60 years or longer of vision!  You should feel LUCKY!"

Don't get me wrong - I DO feel bad for them.  I don't want to see anyone go blind.  I can't imagine how scary it is.  But when I see an 85 year old man in the film who is so glad he can still do what he has always done because of a drug that is helping his age related macular degeneration, all I can think of is how Finley will never have that chance at 85.  She won't have that chance at 25 if we don't find a cure.  There is a chance by the time she is 13 years old that she will have no sight at all.

So forgive me for not being as upset for an 85 year old man who is losing his sight.  He can still drive.  He can still draw.  He can still see.  He has had 85 years to travel the world and see it.  I then think of Finley, or my friend, Jennifer's son - Gavin - who has never seen anything.  Ever.  He is 3.  It just isn't the same.

I am hopeful that one day we will be lucky to have a film made about LCA.  (not us personally - the LCA world in general).  Let the world know that these children are blind.  They did not have the chance that the people in the film had to obtain a "visual" memory of a tree, a sunset, their parents. 

One day, Finley will wake up and her world will be dark.  One day, she will not know if it is morning or night for they will both be the same to her.  One day - without a cure - she will face the reality that is being blind.  And tonight, that is tugging at my heart.

"You can't worry about the what ifs, you have to worry about what is"

Thanks for the memories

When someone passes away - whether you knew them or not, it tugs at your heart.  Another life has ended and that person cannot be replaced.

A friend of mine from childhood - Megan - lost her father a few days ago.  He has not been well, but his death was unexpected, and we are all mourning the loss.  I have so many wonderful memories from growing up with the Truxel family.  Megan and I had been in school starting in preschool - our parents were friends as we grew up.  One of my favorite childhood memories is when Megan's family got a convertible and took all of us for a ride with the top down. 

We spent so much time together growing up - we were always at each other's houses.  And even though after high school, we all went our separate ways, we have been able to keep in touch through the magical world of facebook.  And I am so glad.  Now my friends are all mommies and daddies, and I love getting to see them with their own kids.  How I wish we could live closer so that our kids could spend time together.

Mr. Truxel was a great man.  He was loud, tall, and laughed all the time.  He was always welcoming to those little giggling girls who came to play with Megan, he never minded.  He drove us anywhere we wanted to go.  I can picture his face so clearly, and I am so glad that I had a chance to know him.

Our hearts go out to the Truxel family at this time.  If you know them, or even if you don't, send them your thoughts and prayers. 

Today

 Today I was able to go into Finley's class and teach the first braille letter of the year.  Each Wednesday this year, I will go into the class and teach the letter of the week the kids are working on.  This week's letter was M.  M in not the easiest letter to make on the brailler, but the kids did great.  They were really into it.  I had made each of them a bookmark ahead of time with their name on it in braille for them to take home, and then during the class they each colored a braille M coloring page, and then got to use the brailler to make M's.   It was fun.  The kids told me they had a good time and were glad they had something to take home.  Hopefully their excitement continues.

 Today Cainan and Finley came home with a little homework.  It wasn't required they do it, but something extra they said the kids could try.  I got a glimpse of what it would be like when all three of them have real homework all at the same time.  Three different styles, all at the same table.  That is going to be interesting.

Cainan has a little notebook and has been in to "taking notes" lately.  It is cute.  I took his picture with his little notebook.

He fills it with all kinds of stuff.  He can really only spell his name, so that is in there.  A lot.  And pictures of Batman.  I am just glad to see him with paper and a pen.  Writing is not his favorite.  Or drawing.  He is more a man of action.

Arlington's homework has really stepped it up this year.  Last year she would have about 10 minutes a night.  this year is at least 30 minutes.  That may not sound like a lot, but 30 minutes is about all we have some nights between activities.  We always do her homework the minute she comes in the door.  She gets a little snack and we settled down at the table to get things done.  Each night she has a math assignment, a reading assignment, and a regular homework page in another subject (like today was science.  We had to hunt for 8 different seeds attached to plants outside.  In the rain).  And she is having a social studies test just about every week.  This past week was a test on local history.  She had 4 pages she needed to read and study the practice questions.  We review that each day after homework is done and now her test is tomorrow.  Oh - and she has spelling.  There is a spelling test each week.  And since she doesn't have any problem with the regular 3rd grade words, she takes the challenge test.  With words like occasionally, entertainment, and contemplate.  We practice those each night to make sure she has them down for Friday's test.

So, she is a busy girl!  On top of just school work, she has Girl Scouts, Student Council, and Tennis. (chess was sadly canceled).  And most times she has to go along to soccer games of her brother and sister.  But she holds it all together.  She does her homework without complaint.  She even helped Cainan and Finley with theirs today. 

Tonight I went to help work on some crafts the Garden club is doing for the upcoming holiday bazaar.  It was a lot of fun.  They had a great workshop and tons of things to put together.  It was like being in Michaels.  We worked for 2 hours before calling it a night and we got a lot done. 

Tomorrow is Thursday already.  Where do the weeks go?  Time is going by way too fast.

Continuing our ride through Braille awareness

Have I ever told you the story of my first meeting of the special education director in Salem?  Back when we were still going to be attending their school - before the move.

Let me preface this for all of you who are new to my blog and don't know about this person.  She was a "fill in" special education director while they were looking for someone permanent.  Salem school was wonderful and Finley was going to have fantastic care there.

We were waiting to start her IEP meeting.  I was the first one there and so I sat with the director and we chatted while we waited for the others to arrive.  She didn't know much about Finley - she had only been filling in a few months - so we talked about her.  She asked me if Finley still had vision.  I told her yes.  The next words out of her mouth were "oh good - then she won't need braille or braille materials".

Insert long pause.

I explained that she has a degenerative eye disorder, so that Braille was starting because eventually she would have no sight at all.  That already is was very deminished.

Her come back?  "oh, she doesn't need braille - she can just listen to all the books on tape!"

This.  Coming from an educator.  She doesn't need to learn to read.

I decided to wait for my advocates and told the special education director that we would just have to wait for them.

When you have a child who is vision impaired, but isn't completely blind, strange things come out of people's mouths.  They think that because they can see, that accommodations "for the blind" are not necessary.

But what they are missing is that even though Finley has sight, she has very little.  And she has to work 10 times as hard to see the little bit she can.  By night time, she is done visually.  This is when we see her struggle the most.  She has put in a whole day of school and her eyes are tired.  She spends all of her energy trying to see.

I hear this from parents all the time - I am not alone in this conversation I had with this special education director.  Kids with LCA, just like Finley - with various degrees of sight.  Here are some "winner" statements that these parents here about their kids:

"tech guy who thought teaching Braille to kids was a waste--you know, they have speech software for computers and books on CD."
 

"Now, Everyone knows our daughter has quite a bit of vision.  She is learning Braille and only uses it at this point to label things, especially at school.  At last year's IEP meeting when possible decrease in vision was brought up and adapting reading materials was discussed, one teacher said, 'Well, she can just listen to the books to MAKE IT EASIER FOR EVERYONE'  I said, with very controlled tone (trying to mask my sarcastic anger), 'Well, to really make it easier, why don't you have all of the students listen to the books'  In astonishment, she replied, 'Why would we do that, that's not literacy.'   To which I replied, 'I know, and neither is it for our daughter'"  

"My child had almost no sight. Yet, the teacher tried to teach him Braille by using flash cards with large print representations of Braille dots."

"In my case an educator argued that if a child has some sight, it is destructive for that child to try to learn both Braille and print since only a certain amount of learning can be done and teaching both systems would cut the progress of each in half. That educator went on to say that it is not necessarily essential for a teacher of young blind children (even a teacher who is responsible for teaching reading to those children) to be proficient in the use of Braille. When he was asked how such an argument was different from saying that a French teacher did not need to know French or a math teacher math, he simply responded with anger ~ perhaps understandably since there would seem to be no logical answer that could have been given. "

The article I read recently called "Why do you want to make that child blind?" is worth a read, but too long to post here.  I encourage you to visit this link and read it for yourself.

http://www.nfb.org/images/nfb/Publications/fr/fr29/1/fr290113.htm

The point is - braille remains as important to a child who can't see as reading for a child who can.  When the schools stop teaching kids to read and write, I will stop advocating for Braille.  Maybe.

To end the post with cuteness, here is a picture of two of my sweet nephews wearing their braille shirts.  Baby J's says "loved" and Big E's says "Big Brother".  Love these boys to death.

Up and coming

Today, my friend Maria and I spent many hours getting things ready for a tag sale that is happening in our town in a few weeks.  It was great to get it done.  Many people have donated kids clothing and items to us for this sale to sell. All proceeds will be going to our RDH12 Fund for Sight.  We are excited to have a chance to do our first fundraiser here in Massachusetts and start to get our name out there in the community.

Braille shirts are in full swing - don't forget to order yours.  If you have any questions - just email me, or leave me a comment on the blog.  Someone told me today that they would like me to make it into a framed art for them - the braille.  What a great idea!  So - I can do that for you as well.  The ideas are endless.

Today I was sent an article that was in the Pittsburgh Post gazette about a movie called "Going Blind".  If you would like to read the article, go to:  http://www.post-gazette.com/pg/11276/1178981-114-0.stm  (just click on the link and it will take you there).  I wrote to the gentleman who wrote the article thanking him for writing about people who are going blind and told him about Finley and our foundation.  Hopefully we will hear from him, but in the very least he knows about LCA.

The movie looks good.  You can download it and watch it on your computer from Amazon for $1.99.  If you go to the actual movie sight which is: http://www.goingblindmovie.com/ (just click on the link) you can read more about it, watch a clip, and it will show you how to download the movie to watch.

BUT - more important than all of that (because learning about people who are going blind is very important) is that LCA was not mentioned in the movie.  Most of the people who are in it, are older folks who have lived their life and are going blind.  Not that it doesn't make it sad.  It does.  We don't want to see anyone lose their sight.  And I can't imagine how hard it would be as an adult to lose my sight.

BUT - LCA is the worst form of childhood blindness and it is not mentioned.  While the numbers of Finley's particular type of LCa are small, LCA itself affects 1000's of children.  1000's of children who are losing their sight due to this terrible disorder.  Children who have no chance of growing up seeing their parents, their friends, or anything else we as a sighted community take for granted.

If LCA continues to be in the background instead of the forefront of blind awareness, what real hope do our children have of being cured?  We have said many times - we can raise all the money in the world, but in the end - the FDA and the big funders have the final say.  LCA cannot be left out of movies like this, or articles about blindness, or books about blindness.  Our stories need to be told so that the people who MATTER know we are here.  Know what we want and what we are fighting for.

So - I asks this of my readers.  I ask you to go to http://www.goingblindmovie.com/ and click on the button that says "contact".  I would like you to email the people at this movie and tell them about Finley.  Tell them about someone in your life who has LCA.  Tell them what it means to you and what it means to the families who are fighting to save their children's sight.  Tell them how important it is that LCA's story be told.  That the families who are affected by LCA are fighting so hard and that we are nearly there.  That we have formed foundations, and non-profits, and raised thousands upon thousands of dollars to cure our children.  It is just right out of our reach.  It is that dangling carrot to our family - we can see it, but we just can't quite reach it.

So please - tell them about Finley.  Tell them about your children with LCA.  Tell them how important it is to have our story included the next time they want to tell a story about going blind.

A Canning we will go

A few weeks ago, the male head of house* in our household decided that canning my grandmother's unbelieveably good pasta sauce would be a great fundraiser for the Holiday Bazaar we are going to participating in.

*name has been with held to protect the crazy.

I looked at him and thought this was a great idea in theory, but not in practice.  I know it takes about 3 hours to make one batch of sauce, and so, I wasn't sure this would be a path we would like to take.

I talked to my grandma who has canned tomatoes, but never her sauce, and she too was not sure it was going to be a good idea.  Would it work?  Yes, she said.  But she gave me some other suggestions that might be better choices time wise.

Why did I not listen to the wisest person I know?

Today, I gave into said male head of house and told him we would try it.  I started the adventure at 11am, reading the instruction on canning before getting started on making the sauce.

I made one batch of sauce.  To me, this always seems like a lot of sauce.  At 3pm, I was finished with the sauce, had the other pots filled with the two cans I was going to practice with heating away (you have to heat the cans before you put hot sauce in them) the sauce on another burner, and the biggest pot in the world - the canner - on the 4th burner (and part of the 1,2, 3 burners as well.  Sucker was huge).  We were ready.

 We put the sauce into jar number one.  My plan was to fill 2 jars and keep the rest for us to eat on our dinner that night.   Mat filled the first jar and said "um.....that is almost all the sauce".  I turned around in disbelief.  How could this be?  This recipe makes a huge amount of sauce!  Or at least it did in my head.

In reality, I bought quart jars and the recipe is about 1 1/2 quarts.  Huh.  I spent 4 hours on this little canning job, and this is what I got.

Seriously.  1 full can of sauce.  I had to boil it for 45 minutes to "seal" the jar.  Now it sits on my counter - lonely and sad.

I called my grandmother afterwards and we had a good chuckle about the whole thing.  Not sure if this will be something we try again.  We are going to let the sauce sit on our shelf for a week or two, and then taste it.  Hopefully we won't die.

Canning seemed like a fun idea to bottle a product that my grandmother should have sold to the retailers years ago so that we could all be millionares and retire early.  If it was successful, we will be proud of us.  But 4 hours for one can?  That isn't going to bring in much profit for our RDH12 Fund for Sight.

Ah well.  We will have fun again with it, I am sure.  I think I might stick to my grandmother's suggestions for bottling her sauce and leave canning for other things.

In other news:

Kids broke out the playdough today.  Doesn't happen often because I hate the mess.  But it has been a rainy and cold weekend, and they were bored.  They had a good time with it.

We made pumpkin chocolate chip muffins this morning.  Yum.

I made 5 braille shirts tonight.  I have one more to go tomorrow and then I will be caught up.  Remember - if you would like to order one, please go to:

https://sites.google.com/site/brailleshirts/

Print out and mail to me!

Here are the pictures of the ones I made today.  The pink one - this is the back - it is drying, so I couldn't turn it over.  And the green one has a wet spot - I was wiping it up - so forgive that.

This one says:Steelers

 This one says:

Finley's Fighters (in contracted braille)

This one says:

Retired

This one says:

I'm fighting for Finley (in contracted braille)

 

This one says:

Ho Ho Ho

See you tomorrow!

2 in a row

2 in a row - no pictures.  I am going to be shunned by the grandparents for sure.

It was a rainy day and we sat around inside all day and I didn't get out my camera.  We had a fun day and a productive day, but I just didn't take any pictures.  Apologies to Grammy, GiGi and Gramma.

I have spent a large portion of this rainy day looking for a wonderful place to hold our Dinner in the Dark we are going to have in the late winter/spring.  I am finding that renting a place is going to be more expensive than I expected, but that people are willing to work with us when they hear our story.  And finding a place that is big enough, just in case our numbers grown past 100 people is also proving challenging.  Most of our fundraisers are more than 200 people, so I don't think I want a small place.  But the places I have looked at are very charming and it is making me weigh some options.

I think the event is going to be great fun and it will give our new town a chance to meet us and get to know Finley and what our non-profit is all about.

Since today is a pretty quiet writing day, I will leave you with a quote a friend of mine posted on facebook today.  I think it is quite fitting.

"Let me tell you something you already know. The world ain't all sunshine and rainbows. It is a very mean and nasty place and it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But it ain't how hard you hit; it's about how hard you can get hit, and keep moving forward. How much you can take, and keep moving forward. That's how winning is done. Now, if you know what you're worth, then go out and get what you're worth. But you gotta be willing to take the hit, and not pointing fingers saying you ain't where you are because of him, or her, or anybody. Cowards do that and that ain't you. You're better than that!"

 My favorite part is about taking a hit and keep moving forward.  That is what it is all about.